The Role of Behavior Management in Reducing Distress and Improving Coping in Caregivers of Dementia Patients
About the Authors
Suma P Chand PhD, is an Associate Professor and Director of the Cognitive Behavior Therapy program, Department of Psychiatry, St Louis University School of Medicine. She is a certified diplomate and fellow of the Academy of Cognitive Therapy.
George T Grossberg MD, is Samuel W Fordyce Professor and Director of the Geriatric Psychiatry in the Department of Psychiatry, St Louis University School of Medicine. He currently serves as medical editor of CNS Senior Care; Section Editor, Geriatric Psychiatry of Current Psychiatry and Geriatric Psychiatry for Current Geriatric Reports. He is also on the editorial boards of Demencia Hoy, the International Journal of Alzheimer’s Disease, and the Journal of the American Medical Directors Association.
Suma Chand, PhD and George Grossberg, MD
Foreword by Phyllis Brostoff
Chand and Grossberg have done a rather thorough review of the recent literature of how the behavioral and psychological symptoms of dementia challenge those who provide care to people with dementia. They provide an in-depth analysis of studies of the efficacy of a variety of non-pharmacological behavior management approaches. Aging Life Care Professionals™ / care managers who seek to improve their understanding of behavior management will find this literature review by Chand and Grossberg useful. In their conclusion, Chand and Grossberg suggest that care managers can play a useful role by providing training in behavior management to family caregivers as well as to facility staff.
Behavioral and psychological symptoms of dementia (BPSD) affects up to 90% of all patients with dementia at some point in their illness (Cerejeira J et al., 2012). These symptoms include agitation, depression, apathy, repetitive questioning, aggression, sleep problems, wandering, psychosis, and a variety of socially inappropriate behaviors (Lyketsos et al., 2011). The behavioral and psychological symptoms of dementia lead to an increase in caregiver distress and burden as there is also greater functional impairment in the individual (Black and Almeida, 2004; Kales et al., 2005; Van Den Wijngaart et al., 2007). This paper outlines and examines the efficacy of behavior management strategies in reducing caregiver burden and improving caregiver resiliency as they cope with the care of dementia patients.
Management of behavior problems in dementia patients has become more complicated by the fact that risk and safety factors have been found to be associated with pharmacotherapy which has resulted in their use being limited (Steinberg & Lyketsos, 2012). Non-pharmacological treatments have been recommended as the preferred first line treatment for BPSD except in emergency situations where there are imminent danger or safety concerns (American Geriatric Society, 2013; National Institute for Health and Care Excellence, 2012). The non-pharmacological approach of behavior management has involved training caregivers in the application of behavioral strategies so that they are able to manage these behaviors more effectively. It has also involved strategies to assist caregivers in improving their coping and resilience to face the stress of caring for individuals with dementia. Behavior management techniques include a variety of behavioral interventions such as functional analysis of specific behaviors, token economies, habit training, progressive muscle relaxation, communication training, cognitive behavior therapy, and various individualized behavioral reinforcement strategies (O’Neil et al., 2011). Randomized controlled trials have been carried out which investigated the impact of multi-component interventional programs utilizing behavioral management strategies.
Behavior Management Studies
A number of randomized controlled trials (RCT) have been carried out in community settings which have involved training caregivers in the application of behavioral treatment strategies. Teri et al developed the community based Seattle protocol which involves training caregivers in the behavioral approach in problem solving using the ABC (antecedent-behavior-consequences) paradigm and the application of strategies to increase behavioral activation (exercise, pleasant events). The intervention was evaluated for efficacy in three different randomized controlled trials and in all three trials treatment was found to lead to significantly better function and fewer behavioral disturbances than did the usual treatment or wait-list control conditions (Teri at al., 1997, 2003, and 2005). The first study also evaluated the impact of the behavioral program on mood and found that depression was found to be significantly lower in the caregivers as well as the dementia patients, with improvement being maintained at the six month follow up (Teri et al., 1997). In the third study, which was carried out in an assisted living facility, the caregiving staff who received the training also reported less adverse impact and reaction to the problem behaviors displayed by the dementia patients and more job satisfaction (Teri et al., 2005).
Huang et al carried out a RTC on 59 family based caregivers in the community utilizing an intervention program which involved functional analysis to help identify negative environmental stressors that could be triggering problem behaviors and provision of appropriate environmental support (Huang et al., 2003). The intervention based on the Progressively Lowered Stress Threshold Model (Gerdner et al., 1996; Hall et al., 1987; Hall et al., 1995) was tailored to the individual needs of the caregivers in the community. The intervention consisted of two in-home caregiving training sessions carried out over two weeks, followed by telephone consultations every two weeks for the experimental group. The control group received only written educational materials and social telephone follow-ups every two weeks. Follow-up evaluations carried out at the third and fourth month indicated that in the case of the experimental group there was significant improvement in caregivers’ self-efficacy in managing behavior problems and in a number of the problem behaviors in the subjects with dementia.
In a RCT with a smaller sample size of 31 caregivers two psycho educational interventions directed at the caregivers were compared. One was a cognitive behavioral intervention aimed at modifying dysfunctional thinking in the caregivers and the second was a problem solving intervention aimed at improving caregiver efficacy in modifying problem behaviors in their relative with dementia.
Following the intervention, the caregivers who received the cognitive behavioral intervention showed significantly less perceived stress with a trend towards reduced stress associated with the problem behaviors as compared to the control and the problem solving intervention group. The group that received the cognitive behavioral intervention also reported significantly less behavior problems than the other two groups (Losada et al., 2004). Burgio et al., (2003) developed a manualized intervention involving functional analysis, problem solving, and cognitive restructuring which was delivered to 70 caregivers in the experimental group through workshops and in home training sessions. Another 70 caregivers were placed in a minimal support control condition involving brief supportive phone calls and written instructions. Results indicated that both interventions had a significant impact on caregiver distress since both groups of caregivers reported being less distressed by the problem behaviors and also increased satisfaction with their leisure activities. Both interventions also resulted in reduced problem behaviors in the two groups. The investigators took into consideration the race of the subjects and found that the Caucasians responded better to the minimal support condition and the African Americans responded better to the skills training condition. Differential responses were also linked to whether the caregivers were spouses or not.
In another multi-center RCT 158 caregivers were randomized to the treatment and control groups in 12 successive waves. While the control group attended the traditional support groups the treatment group attended the psycho educative program developed by Folkman et al., (1991) extended over 15 two-hourly weekly group sessions. The program consisted of two main components. The first component targeted improving cognitive appraisal of the problem situations they face in the care of the dementia patient and the second component involved acquiring effective coping skills in dealing with the problem situations.
The cognitive appraisal component of the program focused on breaking down global situations into specific elements in order to clarify the problem and distinguish between changeable and unchangeable aspects of the stressor, leading to a better choice of coping strategies. The coping component focused on the strategies of problem solving, reframing, and seeking social support. With regards to problem solving, caregivers were taught the steps that have to be taken to clarify a target behavior that was changeable, utilizing behavioral techniques and finding an appropriate solution to help reduce the frequency and intensity of the problem behavior.
The reframing strategy was based on the cognitive approach in which dysfunctional thinking is viewed as generating dysfunctional mood states (Beck et al., 1979). Caregivers were trained to recognize dysfunctional thinking and modifying them so that the emotions associated with the dysfunctional thinking is modified and improves as rational ways of thinking replaces the dysfunctional thinking. The third coping strategy consisted of seeking social support. The results indicated that the intervention resulted in a significant reduction in the frequency and severity of the caregiver reactions to disruptive behaviors. There was also a reduction of behavior problems reported by the caregivers in the treatment group with the difference between the study and control group approaching significance (Hebert et al., 2003).
Gonyea et al., (2006) carried out a RCT with 80 caregivers which involved group training sessions for caregivers in the experimental group in a multi-component behavioral intervention extending over 5 weeks. The intervention was based on behavior therapy principles and involved functional analysis and behavioral activation. It was aimed at reducing the problem behaviors, caregiver distress, and burden. The control group received a similar period of group psycho education.
The results of the study indicated that the training resulted in significant reduction in caregiver distress and also problem behaviors in the dementia patients. A RCT was carried out with 54 experimental and 59 control families who provided care to dementia individuals living at home over a period of 18 months (Moniz-Cook et al., 2008). The caregivers in the experimental group were given guidance by trained community mental health nurses in managing the problem behaviors manifested by the dementia patient by applying the intervention which involved functional behavior analysis, problem solving, and stress-coping. The control group received care as usual from the community mental health nurses. Results indicated that while cognition declined in the dementia subjects in both groups the problem behaviors were reported as having reduced in the experimental group and the mood of the caregivers showed improvement at 12 months and 18 months. The control group on the other hand reported reduced coping resources, increased problem behaviors, and worsening of depression.
Gitlin et al., (2011) carried out a RCT on 272 caregivers and dementia patients where the caregivers in the experimental group received advanced caregiving training which conceptualized problem behaviors as being a consequence of interacting factors which could be patient based (unmet needs, discomfort/pain, incipient medical condition), caregiver-based (stress, communication style) and environment-based (clutter, hazards). The training helped caregivers to develop the skills to identify and eliminate, reduce, or prevent the problem behaviors. The control group received no intervention. The study results indicated improved caregiver well-being and skills in managing the problem behaviors as well as significant reduction of problem behaviors in the dementia patients at the end of the intervention at 16 weeks and again at 24 weeks.
In one RCT carried out in a residential care setting (Burgio et al., 2002) a four week comprehensive behavior management training program was provided for nursing assistants. The training included training the nurses in identifying factors in the environment that could impact the resident and behavior management skills training, such as application of specific behavior management techniques and effective communication. The staff was also taught to increase the use of effective antecedent and consequent behavioral techniques and to decrease the use of ineffective techniques. The supervisory staff in the treatment group was provided with training based on the author’s behavioral supervision model in order to apply supervision that would help the nursing assistants maintain the skills acquired during training. The control group nursing assistants received the conventional supervision. In the case of both groups it was found that the behavior management training program improved the nursing assistants’ ability to interact with behaviorally disturbed nursing home residents and produced sustained reductions in agitation. The supervision provided in the treatment group led to more effective maintenance of learnt skills as indicated by the follow up assessment at six months.
The randomized controlled studies on behavior management have typically involved multi-component programs with caregivers receiving training in the application of behavior management strategies. Studies have described training programs involving one or more behavioral strategies such as application of functional analysis in problem solving, behavioral activation, individualized contingency management, or communication skills. In many of these studies, the primary goal of the training has been to train the caregivers in application of the behavior management strategies that will help reduce the problem behaviors in the dementia patient. However, these studies found that it also resulted in positive changes in the caregivers, such as, improved skill in interacting with the behaviorally disturbed patient, improved mood, reduced distress, and less adverse reactions to the problem behaviors.
In some studies the training programs also incorporated training directed at building skills of the caregivers which would enable them to help themselves with regards to stress reduction, depression, and the burden associated with caregiving. These studies incorporated strategies such as cognitive reframing, stress management, and seeking of social support which resulted in improvement in the area of caregiver wellbeing. The length of the period of training, number of training sessions, and follow up support varied from study to study. The studies also differed in the targeted behaviors and outcome measures utilized.
Although the studies have used different combinations of strategies in their multi-component programs, in the length of the training, follow up support, and also in the outcome measures used, the end result has indicated significant reductions in caregiver distress, improvement in caregiver coping, and also in the BPSD. The research in the area has limitations but shows promise in improving the coping skills and resilience of the caregivers along with managing the difficult problem behaviors that are part of this progressive disorder.
Many of the authors who have carried out research on the efficacy of behavior management programs have developed manuals for their programs and they are good educational resources for Aging Life Care / geriatric care managers (Teri, et al, 2005; Burgio et al., 2003; Folkman et al., 1991). The Alzheimer’s Association is an excellent resource for education and training in the area of behavior management directed at dementia patients. They provide online and classroom training programs and also specific training programs that will lead to certification. They also provide details about training programs provided by other organizations that meet the recommended care practices for patients with dementia. The website provides detailed information about educational and training resources for professionals which also include books and DVDs in addition to information about training programs (https://www.alz.org/professionals_and_researchers_professional_care_providers.asp).
Effective non-pharmacological strategies like behavior management have not been translated well into clinical management and standard care (Molinari V, et al. 2010). One of the reasons that have been suggested for the continued limited use of non-pharmacological strategies has been the lack of awareness of their efficacy, and more importantly, lack of training in the application of the strategies (Cohen-Mansfield J, et al. 2013). In the application of behavior management strategies the caregivers would benefit from being trained in the application of the strategies. Individuals with dementia are cared for in a variety of settings such as their own homes, adult day care centers, assisted living, nursing homes, and psychiatric hospitals.
The people involved in the care of the persons with dementia have diverse trainings and back ground since they range from family members, nurses or nurses’ aides, activity staff, occupational therapists, to teams that include a combination of providers. This would be where Aging Life Care Professionals / care managers could play an important role. In the case of dementia patients being cared for in their homes it would be beneficial for care managers to provide training programs in behavior management themselves or assist the caregivers in getting guidance and training in the application of behavior management strategies from other suitable professional sources.
In the case of dementia patients who are being cared for in residential settings it would be helpful for Aging Life Care Professionals / care managers to work with the institution to ensure that the caregiving staff receive training in the application of behavioral strategies. An interdisciplinary team approach becomes imperative in applying behavior management interventions in residential settings and the Aging Life Care Professional / care manager could play an important role in ensuring that the team functions cohesively with the support of the institution.